Over the last three years, we’ve shared some remarkable stories and encountered some amazing people, defying the odds in their personal battles with disease. One of those individuals is Emily Muller of Chicago, Illinois.
Emily and her friend, Shira Strongin have been vocal advocates on the #Path2Cures. What makes them unique is their age. Just a few months ago, Emily and Shira spent their summer vacation on social media, urging passage of the 21st Century Cures Act.
From attention-grabbing graphics for their Cyber Rallies to making the rounds on Capitol Hill, everyone knew these teens meant business. And it is because of their efforts, and the help of energized patients like them, that 21st Century Cures is about to be signed into law.
The #Path2Cures has been paved by people like Emily. Thank YOU for all your help. Together, we will deliver #CuresNow.
December 7, 2016
By Emily Muller
We passed #CuresNow.
In less than three years I’ve had the opportunity to write numerous articles, host two cyber-rallies, engage with countless Congressmen, and make two trips to DC. It has all been out of passion for this legislation. I can’t begin to put into words exactly what this means, so I’ll start by saying thanks.
Shira, thank you for spending Washington nights with me, dancing to synth pop in an old funeral parlor for the irony and allowing me to be with you while you grieved the loss of a dear friend in a hotel room. Thank you mom for being the ultimate travel partner and allowing me to explore city streets and take cabs to the Rayburn Foyer. Thank you dad for taking care of my precious pups when I’m away and always encouraging me to work for causes I care about. Thank you Stephanie and Max for the sugary breakfasts, late night emails and for giving a girl originally no more than 15 the chance to influence a movement. Thank you Sean and Jennifer for making me comfortable enough to share my own ideas and being two of the most driven people I’ve ever been in contact with. Thank you Dr. Stone for getting me in Forbes with the best Californian friend a girl could have. Thank you to all my advocate friends, especially Jamie, Tracy, and Ashanti, for being the most incredible lobbyists to learn from. Thank you Lisa Schill for providing me with endless inspiration even though I’ve never met your beautiful Max. Thank you to the skeptics that pushed me to stay educated and allowed me to prove myself as more than a misguided kid. Thank you to the Congressmen that told me stories through the years and allowed me to see what history looks like. Finally, Representative Upton, although we’ve never met you made this possible. I could write for days about just how much your efforts mean to me but no words could ever be kind enough to capture the full extent of my feelings. Thank you for Cures.
Let us think of the friends we lost before they had the chance to see this day. We’ll continue to fight for them – to make it clear that no one else should have to suffer the way that they did in this life. Treatment should be a right afforded to every American and with this legislation we’re one step closer to having a regulatory process that works for individuals with rare disease. I hope that if I have children they will never hear the words “there is no treatment,” and I hope that they won’t know the pain of burying friends.
Let’s celebrate but never forget that we’ve still got work to do. OPEN Act is next. Just you wait.
Photo from my first trip to DC. Carnegie Institution for Science. Age 15.
Click HERE to read the blog post online.